Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple Sclerosis
There is enormous variation in the manifestations of disease experienced by people with multiple sclerosis (PwMS). While this variation makes personalized medicine an attractive goal, there are many challenges to be overcome before this opportunity can be realized. Personalized medicine often focuse...
| Main Authors: | , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
MDPI AG
2021-08-01
|
| Series: | Journal of Personalized Medicine |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2075-4426/11/8/791 |
| id |
doaj-7d64d9647ef24831ac7e6a316b0ab725 |
|---|---|
| record_format |
Article |
| collection |
DOAJ |
| language |
English |
| format |
Article |
| sources |
DOAJ |
| author |
Adam Henschke Jane Desborough Anne Parkinson Crystal Brunoro Vanessa Fanning Christian Lueck Nicola Brew-Sam Anne Brüstle Janet Drew Katrina Chisholm Mark Elisha Hanna Suominen Antonio Tricoli Christine Phillips Matthew Cook |
| spellingShingle |
Adam Henschke Jane Desborough Anne Parkinson Crystal Brunoro Vanessa Fanning Christian Lueck Nicola Brew-Sam Anne Brüstle Janet Drew Katrina Chisholm Mark Elisha Hanna Suominen Antonio Tricoli Christine Phillips Matthew Cook Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple Sclerosis Journal of Personalized Medicine personalized medicine multiple sclerosis lived experience uncertainty fatigue management |
| author_facet |
Adam Henschke Jane Desborough Anne Parkinson Crystal Brunoro Vanessa Fanning Christian Lueck Nicola Brew-Sam Anne Brüstle Janet Drew Katrina Chisholm Mark Elisha Hanna Suominen Antonio Tricoli Christine Phillips Matthew Cook |
| author_sort |
Adam Henschke |
| title |
Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple Sclerosis |
| title_short |
Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple Sclerosis |
| title_full |
Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple Sclerosis |
| title_fullStr |
Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple Sclerosis |
| title_full_unstemmed |
Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple Sclerosis |
| title_sort |
personalizing medicine and technologies to address the experiences and needs of people with multiple sclerosis |
| publisher |
MDPI AG |
| series |
Journal of Personalized Medicine |
| issn |
2075-4426 |
| publishDate |
2021-08-01 |
| description |
There is enormous variation in the manifestations of disease experienced by people with multiple sclerosis (PwMS). While this variation makes personalized medicine an attractive goal, there are many challenges to be overcome before this opportunity can be realized. Personalized medicine often focuses on targeted therapies and detailed monitoring, but we also need to recognize that there will be variation in acceptance of these approaches by different PwMS. In other words, deep personalization of medicine will encompass targeted therapy, precision monitoring, tailored to variation in personal attitudes to these transformations in health care. In order to meet the promise of personalized medicine for MS, understanding the experiences of PwMS is necessary both to aid in the uptake of personalized medicine, and to ensure that personalized approaches to monitoring disease and treatment provide a net benefit to PwMS rather than placing additional burdens and stressors on them. Here, we describe recent research that identified five experiential themes for PwMS, and then interpret these themes according to the foundations of personalized medicine to provide a road map for implementation of personalized medicine solutions for PwMS. |
| topic |
personalized medicine multiple sclerosis lived experience uncertainty fatigue management |
| url |
https://www.mdpi.com/2075-4426/11/8/791 |
| work_keys_str_mv |
AT adamhenschke personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT janedesborough personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT anneparkinson personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT crystalbrunoro personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT vanessafanning personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT christianlueck personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT nicolabrewsam personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT annebrustle personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT janetdrew personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT katrinachisholm personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT markelisha personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT hannasuominen personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT antoniotricoli personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT christinephillips personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis AT matthewcook personalizingmedicineandtechnologiestoaddresstheexperiencesandneedsofpeoplewithmultiplesclerosis |
| _version_ |
1721192171999068160 |
| spelling |
doaj-7d64d9647ef24831ac7e6a316b0ab7252021-08-26T13:58:00ZengMDPI AGJournal of Personalized Medicine2075-44262021-08-011179179110.3390/jpm11080791Personalizing Medicine and Technologies to Address the Experiences and Needs of People with Multiple SclerosisAdam Henschke0Jane Desborough1Anne Parkinson2Crystal Brunoro3Vanessa Fanning4Christian Lueck5Nicola Brew-Sam6Anne Brüstle7Janet Drew8Katrina Chisholm9Mark Elisha10Hanna Suominen11Antonio Tricoli12Christine Phillips13Matthew Cook14Department of Philosophy, Faculty of Behavioural, Management, and Social Sciences, University of Twente, 7522 Enschede, The NetherlandsDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaAustralian National University Medical School, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaJohn Curtin School of Medical Research, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaDepartment of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaSchool of Computing, College of Engineering and Computer Science, Australian National University, Canberra 2601, AustraliaResearch School of Chemistry, College of Science, Australian National University, Canberra 2601, AustraliaAustralian National University Medical School, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaJohn Curtin School of Medical Research, College of Health and Medicine, Australian National University, Canberra 2601, AustraliaThere is enormous variation in the manifestations of disease experienced by people with multiple sclerosis (PwMS). While this variation makes personalized medicine an attractive goal, there are many challenges to be overcome before this opportunity can be realized. Personalized medicine often focuses on targeted therapies and detailed monitoring, but we also need to recognize that there will be variation in acceptance of these approaches by different PwMS. In other words, deep personalization of medicine will encompass targeted therapy, precision monitoring, tailored to variation in personal attitudes to these transformations in health care. In order to meet the promise of personalized medicine for MS, understanding the experiences of PwMS is necessary both to aid in the uptake of personalized medicine, and to ensure that personalized approaches to monitoring disease and treatment provide a net benefit to PwMS rather than placing additional burdens and stressors on them. Here, we describe recent research that identified five experiential themes for PwMS, and then interpret these themes according to the foundations of personalized medicine to provide a road map for implementation of personalized medicine solutions for PwMS.https://www.mdpi.com/2075-4426/11/8/791personalized medicinemultiple sclerosislived experienceuncertaintyfatigue management |